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Old 02-20-2012, 12:29 AM   #1
loveappletrees
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Justins Wish trip :) Pre trip report...

Hi there

So I'm not sure how to start or if I am doing this correctly but my son has been granted a wish through the rainbow wish society of Alberta. A wonderful organization that grants wishes for kids with chronic or life threatening disorders or conditions.

rainbowsociety.ab.ca


We are hoping to be able to take his trip to span over the star wars weekends( star wars=major obsession). The tricky part is that we adopted a daughter and our wish organizer can't organize until we get her passport (which we need finalization papers and new birth certificate for!) The papers are in the courts just waiting....

I've taken a bit of a peek on the boards to see how everyone's wish trips went and am hoping you all wouldn't mind helping me with some questions and answers to help me make my son's wish trip truly magical..

Last edited by loveappletrees; 04-17-2012 at 05:41 PM.
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Old 02-20-2012, 12:46 AM   #2
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Feel free to ask any questions and we will try our best to help. You may want to ask them on the Wish Trippers thread as well.
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Old 02-20-2012, 07:06 AM   #3
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Quote:
Originally Posted by newdrama12 View Post
Feel free to ask any questions and we will try our best to help. You may want to ask them on the Wish Trippers thread as well.

I just stuck the Wish Trippers thread toward the top of the board to make it easier to find.

You will find a lot of advice there. Some may be about the Make a Wish organization and not be applicable to your family, but there is a lot of general information there. That thread also has quite a bit about Give Kids the World, which is where many Wish kinds stay, regardless of the organization that is sponsoring their wish.
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Old 02-20-2012, 10:47 AM   #4
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GKTW sounds great the sense of belonging and community must be amazing to be a part of. But our wish society has a contract with Lake Buena Vista Resort & Spa so that is where we will be staying, has anyone been there? Can anyone tell me anything about them?

Thanks for moving the wish trip thread up for me

-m
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Old 02-20-2012, 12:05 PM   #5
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I'm not familiar with that resort. Do they have a website you can visit or does your WISH organization have more information? Hopefully someone will come along who has stayed there. I hope you get the dates you want and have a magical trip!
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Old 02-20-2012, 12:09 PM   #6
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I haven't heard of that resort either, would be interested in their link as well.
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Old 02-20-2012, 12:50 PM   #7
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Quote:
Originally Posted by loveappletrees View Post
GKTW sounds great the sense of belonging and community must be amazing to be a part of. But our wish society has a contract with Lake Buena Vista Resort & Spa so that is where we will be staying, has anyone been there? Can anyone tell me anything about them?

Thanks for moving the wish trip thread up for me

-m
Here is the .com: http://www.lbvorlandoresort.com/
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Old 02-20-2012, 04:40 PM   #8
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J's wish trip

Yes, that is their site, thank you for posting it We would love to talk to any other Rainbow wish families that may be out there and have done the WDW wish with their child. Also if anyone has any tips or hints about wish trips that span over star wars weekends we would love to hear from you too.

I will try to get back here after the kidlits are in bed to do a little into and put our tentative plan out there.

Thank you to above repliers .
I feel super lucky to have stumbled on these boards when I was searching the net for ways to make J's trip special. I am so excited to as J says lets get this thing planned!

I asked him today what was most important for him to see or do on his wish trip his reply was "well... um just everything we can fit in to see and do.."
no pressure!!
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Old 02-20-2012, 08:00 PM   #9
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It is a lot closer to all the Parks than GKTW. However, it is a high-rise hotel at the edge of an outlet shopping mall.
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Old 02-20-2012, 10:13 PM   #10
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an intro to J

Hi again everyone

Here goes a bit of an intro:

Our wish kid is Justin...
He is our "lottery child".
We apparently had a one in a billion chance of having him. He has a rare chromasome disorder that only one other living child in the world has. There is no actual name but in basic terms the short arm on his chromasome goes 11,12,13,12,13,14... so he's got a little extra something, something

So, From the time he was born (4 weeks early) It started out (kinda) normal he did need oxygyn after birth but they sent us home the next day said that he may have delays from being born early…

Well we got him home and turned around and took him back to the city an hour later, he just didn’t seem right.

When we got back to the hospital they tested his sugars and they had bottomed out and he was emergency gavaged(fed by tube) so he didn’t get brain damage from the lack of sugars. At this time they decided we shouldn’t have been sent home as his billyrubin was too high. So we were admitted to the NICU for the next 2 weeks

This is when the clues started that there was something abnormal although we wouldn’t recognize it till later. From there the next thing I noticed when he was feeding one day was that one of his pupils was misshapen and the iris was somewhat bumped up. He also couldn't track a toy visually. The bump turned out to be a rare iris cyst something that the leading pediatric opthomologist (who was retiring) hadn’t seen in his career. If it was left it would grow and cause him to be completely blind in that eye so at 6 months he had surgery to deflate it. From that surgery he did later develop cateracts and needed surgery again to implant an artificial lens and then a third time to make a hole in the artificial lens because cells were collecting underneath. Also with his eyes he has a condition called nystagmus where his eyes bounce and drift and snap back into place, this is a nurological condition that cannot be corrected. So with all of those things plus his farsightedness he is legally blind.

The next area of concern was his development he didn’t follow the usual timeline and didn’t sit until a year, walk until two etc. He does pretty well now but has Sensory processing disorder and dyspraxia( brain to muscle planning difficulties) . SPD causes him to fear/ be easily overwhelmed by certain sounds etc.unlike ADD where you can't focus on one thing easily with SPD you can't not focus on everything.
He has a stronger fight flight or flee reaction and is constantly in a state of hyper awareness.Our OT says to imagine that feeling when you are driving along and some thing darts in front of your car, you slam on the breaks and are likely feeling your heart pumping in your ears your eyes darting around looking for anything else that may run out and shock you and a shakey feeling from your head to the tips of your toes, thats the way SPD kids feel all-the-time.
but on the other hand he is a sensory seeker so you will find him desiring thrill rides because they make him feel right in the world, he is such a different kid at Disney if we could we’d live next door!!.

One risk in the area of the chromasome that is abnormal in J is a tumor of the kidneys so at 2 years old when he was diagnosed they started doing ultrasounds and found the kidneys to be smaller and denser than they should be. When he was 3 they did a biopsy and found that he has a prolific cystic disorder(basically his kidneys are filling with micro cysts) so they said he by 5 would need a transplant, but then he didn’t so then they said 6 or 7 then when he was 6 they said 7 or 8 then 9 then they said they have no idea why he didn’t need one yet and( keep in mind that it could change at any time) but now they are thinking late teenager before he needs his transplant. While they were doing the biopsy they found that he also has an unknown auto immune disorder that under the scope looks like lupus but isn’t or he would have been in end stage renal falure…Dr.’s around the world have no idea about it.. (see he’s a lottery kid I tell you) And in a couple years they want to do another biopsy to see what’s going on. And we continue with yearly ultrasounds.

So other than his major stuff he also has hypoglycemia, weight gain problems even though he has 2 cans of pediasure in addition to all of his snacks and meals, allergies, asthma, a malrotation of his intestine and some cognative delays. He is also extra lovable, sweet and truly unique.

…. Phew I think I got it all?! If you have kept reading, sorry this is really LONG!!
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Old 02-21-2012, 12:36 AM   #11
loveappletrees
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photo- if it works

so that didn't work.. can I delete this post ?

Last edited by loveappletrees; 02-21-2012 at 11:34 AM.
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Old 02-21-2012, 12:48 AM   #12
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Image 2nd try

My kidlits
H is 6 C is 3 and our wish boy J is 10
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Old 02-21-2012, 12:52 AM   #13
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Old 02-21-2012, 10:22 AM   #14
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Here is Justin's (cheesy) reveal video. my MIL wanted to witness the reveal because she was supposed to be going with us as our helper so we saved the big reveal for our family reunion in the mountains. We wanted it to be really special, but how?
I made a large print note and rolled it up into a little scroll which I then placed in a blown out emptied eggshell then I stuffed it with confetti and sealed the small holes with toothpaste then put it into a bag. We took it up to my in laws property and hid it in plain sight a little way into the woods. When we got there to bury a family time capsule my father in law reported seeing Chip and Dale up here talking to the other chipmunks
"I wonder what they were doing all the way out here"?

http://www.youtube.com/watch?v=Fd4gCZIcQq4

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Our Pre-Trip report: http://www.disboards.com/showthread.php?t=2880842

*To see the wish reveal video*: http://www.youtube.com/watch?v=Fd4gCZIcQq4

*its kinda cheezy

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Old 02-21-2012, 09:00 PM   #15
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Impressive Credits

Melissa:

So glad you found the Disboards. Maroo on the Wish Trip Forum has been a tremendous help to tons of people as they plan their trips. You will also find a lot of help by reading the TRs and asking questions on the Wish Trip forum.

I loved the "cheesy" video. The credits were impressive. You have some mad skills ! Looking forward to reading about your plans.

~Elisa
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